Young children- and talking about it

I am 45 and have a 5 year old daughter and my little boy has just turned 3. I am due to have WLE and sentinel node on Friday. I have told them I am having an operation on my arm and my daughter understands,but my little boy loves full on cuddles. They are staying with my sister over the weekend, and my husband is off work next week.
I am just worried how I am going to feel post operatively as I have never had a general anaesthetic, and I don’t know how sore I will be.

Also I have found it really difficult talking about it to people at work etc. I have told a few people who have told others, but I am not now sure who knows and who doesn’t, and nobody every mentions it to me, they just say "how are you ?"and I say “fine” because actually I don’t feel at all unwell. When I have told people I am sometimes surprised by their reaction but then, I don’t know what I would say if they told me.

I also feel frustrated by the hospital staff the way they drip feed you information. They never even mentioned chemotherapy until I asked about it, and then the BCN said it was quite likely I would need it because of my age and it is viewed as preventative. I’ve only just discovered this website but you get more info from it than you do from the hospital.

Hi dibskelly, welcome to the BCC forums

I am sure you will find lots of support and information here from your fellow users, in addition, I have posted the link to our ‘New resource’ pack which you may find helpful to read, it has been designed for anyone newly diagnosed:

breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTemplate/PublicationDisplay/publicationId/82/

Here’s are links to our ‘Talking to children’ publication and the ‘Mummy’s Lump’ book which is aimed at younger children which you may also find helpful:

breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTemplate/PublicationDisplay/publicationId/21/

breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTemplate/PublicationDisplay/publicationId/18/

You may also find our helpline useful to call, the lines are open 9-5 weekdays and 9-2 Saturday on 0808 800 6000, here you can speak to someone in confidence, ring up for a listening ear or further information about all aspects of breast cancer.

Hope this helps.

Take care
Lucy

Hi dibskelly

I also have two children ( girl 5 and boy 3 next month). I had my op in April, it was slight different as it was a mammoplasty( a longer op). I understand your concern about recovering from the operation. Everyone reacts differently to anaesthetics and some recover more quickly than others. I don’t do well with them and I will be honest it took me about 10 days to feel completely well. However I have read other posts where women have recovered much, much more quickly, in just a few days.( the actually wound did not cause much discomfort as all, but my arm was numb.)
My advice would be to have back up. I was told not to lift my little boy for a few weeks- very tricky as he was understandable clingy.Do what you feel like. Your body will tell you if you have done too much. You may find you recover much quicker than you expect but don’t be hard on yourself if you don’t.

Work is tricky. I kind of told everyone in general, but only told very select people specifics on the understanding that, that was not for general knowledge. In a way the only control I had was who I told and what I told them.

I agree that hospitals drip feed you information and that can be frustrating but before your operation there is such a lot they don’t know, so they can’t tell you exactly what they are going to do.
Good luck with your operation.
Take care debx

Hi dibskelly,

You have come to the right place,

I am 45, but with 4 older children, I had a WLE and full node clearance at the end of March.
As 2 of my nodes were affected i was advised to have chemo and radio.
I was told the chemo was more because of my age to.

I have just had my 2nd chemo, not as bad as i expected at all.

There are lots of ladies who have been here for a while, they will be of more help to you than i can be, but you will get alot more advice and support here than you may realise.

I hope all goes well for you, take care
Sandrae x x x

Hi dibskelly
It sounds really frustrating for you trying to get information at an already difficult time.

My two were the same age as yours when I was diagnosed. I’m 2 years post dx now, and it may help you to hear that my kids are very normal, cheeky, happy kids in spite of some tough times. I had my chemo first, so things took a bit longer as I was weaker by the time I had my surgery, but whichever way round I would think it is probably a good idea to have some back up. As for cuddles etc, mine got used to the idea of coming in for them on my ‘good’ side!

I found both the BCC publications Lucy suggests useful. I found it hard to read ‘Mummy’s Lump’ at first, but as soon as I did the kids liked it and would ask to read it.

Hope it goes well, take care
C xx

hi dibskelly,

sorry that you have been diagnosed with bc.Its horrid waiting for your operation, at least afterwards you know that the tumour has been taken out and that you have an action plan, so its easier in a lot of ways to deal with it.

I am 36 and was diagnosed in march. I have 2 children aged 4 ( now 5) and 2.I had a wle and snb. The anaesthetic made me very sick staright after the operation, so if you are a sicky person, i would ask them to make sure they have your painkiller drugs already written up by a doctor to be given intravenously aftre your operation. they gave me some by mouth and i threw them up and couldn’t have any more for ages! The other tip would be that if you want a pre med to relax you, make sure your consultant has already written that up before you get to hospital so it is there on your records and the nurses don’t have to search for a doctor. Also, i found the water bottles with a pull up lid were great as one arm was out of action from the sentinel node biopsy and the other had a cannula in so was sore, and i would have struggled unscrewing a bottle or pouring a drink.

I felt rubbish for about 4 days after, mainly due to the aneasthetic and emotional fall out! I had really good movement almost straightaway and full movement within 2 weeks. I could drive fine after 2 weeks. I cuddled my sons on the good side and just explained to them that mummy had apoorly bit and pointed out where and that i had to go to hospital and stay overnight as the dr wanted to do an op to take it out,so they would have to be very gentle with mummy. My eldest son just asked if daddy knew it would be non uniform day and that he wanted to wear his pteradactyl top! I had been so worried about telling him but it totally went over his head and he just accepted it. My youngest was clueless! They both missed me, but were really good when i came home.

If you have help, take it. I have started chemo now and first time the boys were here and it was stressful, so the second time we packed them off to their grandparents fro 3 nights and though i missed them like mad, they were having a great time so on balane it was the right thing to do.

Hope my experiencehelps you a bit. I read “mummys lump” and it made me sob! But there were useful explanations to pinch from it, like the explanation of special medicine for chemo. i have only told the children piecemeal as and when they need to know and have found this has worked.

Take care
Vickie

ps. i think most younger women have chemo as they told me they throw everything including the kitchen sink at young women.

Hi dibskelly, sorry to hear you had to join this club, you will find lots of support here! I know what you mean by being drip fed information, I had the same but I also think my mind was quite blank those first few weeks in feb and not sure if I could have digested all information at the beginning to this day I can’t remember anything about the appointment when I was told it was BC! Your treatment will depend on your pathology so take a step at a time and recover from your op! I am also 45 my boys are now 9&10. Basically they have taken it all in their stride. We have been honest and matter of fact with them. Telling school, friends etc was hard, everyone has a breast cancer story to tell, their aunt, neighbour etc! Mostly the response has been offers of help, and genuine upset for my close friends. I am now halfway through chemo after mx&recon&node clearance and even though it feels surreal life carries on more or less like it always does. Physically it can be challenging but you will find ways to cope, I think mums always do and there is so much understanding and information here. All the best for your op and a speedy recovery! XTina

Hi
I was 39 at dx and my girls were 4 and 2. Like others, I cuddled them on the other side.

I found ‘Mummy’s Lump’ fantastic, it helped to normalise things for them as they could see other children whose Mummy had no hair etc.

When my chemo brain was at its worst, I found it really hard to read bed time stories, I felt that I was reading like a very young child without following the meaning or the story, but they didn’t seem to notice or mind. However, the worst part for me was being away from them for 6 weeks (I came home at weekends)whilst I had rads, although they and my husband coped really well.

2 years on and they never mention it all, it doesn’t seem to be part of their lives. It is hard but you will get through it.

Good luck
Kinden
x

Hi Dibskelly,

So sorry that you are having to go through this too.
I was diagnosed nearly a year ago now at 33 with two little girls aged 4 and 2. They will probably through everything at you as a prevenetative, i ahd bi lateral mastectomy (my choice for the other side due to family history) Chemo and rads now on herceptin and tamoxifen, and to be truly honest my kjids kept me going throughout all of this.
My husband and i have been honest with them from day one, never hiding anything, they know mummy had a lump and then she had her sicky medicine to make her better (i too had to ship the kids off for a week during chemo especially towards the end I found it quite tough) Take the help if you ve got it, i was very lucky, my mum in law was amazing and we have a much better relationship now and my own mum gave up work to help me altough living 160 miles away. Support is essential with children as it will make it easier for you.
But 6 months on from chemo and life is starting to be amazing again, back at work now and look after my own kids again all the time, it is such a hard time and while your going through it you cannot see the end. But now I do look back and think was I that bad and my mum reminds me YES!!!
Im now looking forward to my reconstruction next year and enjoying every minute, the simple things in life, family time and the little things dont matter any more. If you ever want someone to talk to private message me

As for telling people I again was honest with everyone, Got all my team together and told them,it has been hard going back to work but easier because everyone knows.

Loads of luck for friday and as for the cuddeles my two year old was the same, you just adapt and they do too. We found putting pillows next to me and then letting them cuddle up helped

Nicki

Hi Dibskelly,

I am twenty eight and have two children 4 & 2. I was diagnosed in October last year and had mastectomy in the Nov, didn’t find the op that bad, more the idea of it and the build up to it, My children have handled it really well, the little one is too young to understand and i diluted the whole thing down for my four year old telling her i had a poorly bit they needed to take away to stop the rest of me getting poorly, BCC do a great book called Mummy’s got a lump that you can get free from this site. I got it when i’d started the chemo and it just clarified things for my oldest. I am two months on from finishing my chemo now (which was bad at times but, do-able)And have had my second herceptin which is so easy by comparrison.
In a way i think if you have children you cope better as you have top stay strong for them and it’s them you are going through this for, it gives you a focus. I really wish you well and i hope you remain strong through out.
Debs. x

Thanks for all the messages of support.
Came home from hospital yesterday, and feel amazingly well after the op. They took all my nodes out in the end, and I will be having chemo. But, on the positive side, the surgery looks nice and neat and isn’t giving me any pain. Apart from having a bad reaction I think to some cocodamol they gave me on the first night (I couldn’t sleep cos I thought the bed was shaking), I feel fine, and slept very well last night in my own bed. My arm is a bit numb at the top, and my boob a bit blue from the sentinel node, but I’ve got good movement in my arm.
Now I know about the chemo, I will have to talk to the kids about hair loss etc, so will try the mummy’s lump book. They’ve been at my sisters for the weekend (the first time they’ve slept away) and have had a brilliant time, so I may have to ship them off there again when I start with the chemo.